Saturday, July 14, 2018

Offering some hope

We met with Rich's PCP...Primary Care Provider this week.

She is one very straight forward person and she also tells you like it is.

"How are you today Mr. Ewing?"

Rich shrugs. "I'm dying bit by bit."

She answers, "We all are, but I understand how you are feeling. Your meeting with Neuro-psychology flagged you for severe depression. We need to turn that around as quickly as possible."

Rich stares at the floor and then something far away. "Nothing can make me feel better, I just want to feel better once, you know?"

She nods. "Of course you do! I've put in a call to your psychiatrist and he needs to review you AND see you ASAP."

I interject. "I wonder if his meds don't work any longer. Rich has a history of his medications for depression working well for about 6 to 8 years...and then..."

She nods and types swiftly, "You are absolutely right. We may end up with a different regime of meds. And speaking of that we are going to stop the Tamulosin right away. I think you have had nothing but poor reactions to it..."

I pipe up. "I know Rich doesn't want this, but can we look at oxygen therapy? Lately he can't function very long without going back to lay down with his CPAP and 02. He feels extremely fatigued and 'out of it'."

She nods sand turns to Rich. "We will test you, and your heart, your lungs are not elastic so you may need oxygen to keep from damaging your heart, lungs, and brain further. Are you open to that?"

Rich makes a face.

Doctor pats him on the back and says, "Struggling to think, to walk, to breath, is no fun. This will help."

I point out that since he spends up to all but 4 to 5 hours a day with his CPAP and 02, that he is already ON oxygen. She agrees and I see Rich make that connection.

He asks about the aneurysm. She looks at it and says, "If they want to do it, go for it. IF you go in alive you come out just fine." She is not being cavalier, just straight forward.

She types some more.
"I'm ordering a stress test for your heart. I'm putting in for an immediate re-eval of your psych meds."

Then she turns to him. "You know, you are dying, we all are, but I think we can make some adjustments so you don't feel so depressed, so tired, and so frustrated.
I'm going to put you on Aricept for your dementia. I see you will be visiting speech therapy, OT, and cognitive therapy."

She raises her hand and draws a line. "I want to hold you here for along time. Mr. Ewing, you will live and you will feel better. You have a good partner and wife, she is looking out for you."

We leave and I think we both feel a bit of hope.

Is it real hope? I believe so. Because not believing it is not going to help us.
Hope always helps.

Tuesday, July 10, 2018

The letter & Appointment

The letter regarding Rich's test results with Neuro-Psychological testing came today.
The letter diagnoses Rich with a major neurocognitive disorder called 'dementia'. The severity is considered mild at this time.

The letter goes on to list the main causes of his diagnosis. In some ways I am glad the list is there and in some ways I find it offensive. In one hand I knew that his health issues are all contributors to his 'Vascular Dementia' however having it printed out in black and white seem to be a shock.

Depression and PTSD are major contributing factors but cerebrovascular disease are the main causes. Yes, I knew that.
The facts are there.

I asked Rich if he wanted to read the letter. He waved a hand at me. "You read it, you can understand it."
So I read it.
The recommendations are fairly straight forward. Exercise, quit chewing tobacco [he is trying when he remembers], eating healthy [we mostly do], speech therapy, language therapy to help practice communication skills, and thinking skills.

Exercise. He preaches it to his mom. And when I ask him to do something physical -- he can't or is it he won't? I think it is *he cannot*. He says that he feels exhausted at all times. He says he can't, he can't do it. Over and over. If I push for him to do something physical he gets angry and goes to bed.
I get tired of pushing and asking him to help.

During the afternoons now, he watches Netflix and sits on the edge of the couch with the volume turned up nearly as high as it can get.
I can't go back and change his lifestyle that lead to this place we are at now. I can only try to deal with it one day at a time.

Yesterday we had an appointment with Neurosurgery. We were nearly late when we arrived at the VA so I hustled us to the floor where we'd seen Neurology last year only to find out we were in the wrong place. Again, we rushed down to clinic B.

After the vitals were taken [his blood pressure was high] we were ushered into an exam room.
The doctor sat down and I innocently asked why we saw him in this clinic rather than the clinic upstairs.
He very pointedly told me that HE was Neurosurgery [emphasis on surgery]. Upstairs was Neurology, they were vastly different.

I explained that we thought we were there because he was supposed to see Neurology for a follow up in one years time. [Emphasis on Neurology]

He batted an eye and then asked Rich if he knew what he was here for. Rich glanced at me and then the doctor. He shrugged. "Because of my brain?"

The doctor launched into his spiel. "The CT scan you had done a few weeks ago show a change in your brain aneurysm. We are here to discuss ways of dealing with that. Did you know you had an aneurysm?"

Rich glanced at me. I answered, "Yes Dr. Kabbani who did the surgery to clear the clots in his brain told us that last year in May of 2017. The neurologist that we saw last year at the VA also reviewed it at the time. The aneurysm is in the Circle of Willis and it is a fusiform aneurysm. We were to follow up with Neurology one year later."

Rich added in his halting aphasia way that he knew the Doctor had to go in more than once to get stuff out and that his thoughts and words were scrambled.

The NeuroSurgeon turned and began typing rapidly. He started to read Rich's history. I pursed my lips. This doctor hadn't done his backround on his patient. My confidence level in him changed. What happened to cause this appointment? Did he note that Rich had a rare aneurysm? One that would be an interesting case to 'fix' surgically? The doctor was a UW Madison doctor, the UW is excellent and is also a teaching hospital.

Finally he turned back to us and said, "I see, last year you saw Dr. ---- in Neurology and he consulted with Neurosurgeon ... Dr. ---- and that doctor said nothing needed to be done at that time."
He frowned and then continued, "I'll put a call into Dr.----- and see what he recommends for this change in your aneurysm."

Rich stared at him and then the doctor pulled out a sheet of paper and explained to Rich what his odd and rare aneurysm looked like and how difficult it could be to 'fix' because it was between two major arteries that fed the brain.

"We may need to do an angiogram or another CT...," he went on, "..and then make some decisions..."

He made a quick exam of Rich and his reflexes then asked a few questions. He then reiterated that he'd let us know what was going on.

I stood and looked the doctor in the eye. "You do understand that my husband has been recently diagnosed with Vascular...." I let my words fall off.
He nodded. "I read that."

"You have read his history and health then right?"

The doctor nodded.

I don't think he really had. I think he saw an opportunity to see and possibly do surgery on a rare case. I think Rich's brain was of interest to him. His demeanor was not compassion for the whole person.
I decided that I didn't like him at all.

We left with no plan of action and we felt as if we'd been broadsided.

On our way home Rich said, "My life stinks. I have no life. I don't think I want that guy inside my head."
Me: Then he won't be.
Him: I mean what if the thing blows up? I mean what if he fixes it and I keep on living like this?
Me: Well he didn't really end up talking surgery, but I wonder what the risks are.
Him: Me too. What if he scrambles me more.
Me: Won't happen. I won't let him in there if those are your wishes.
Him: I'm dying a little at a time anyway. I'm so depressed.
Me: Silence.

Him: Do you suppose I can go to the doctor just ONCE and get some good news?
Me: Silence again.
Him: What next?

Rich reclined the seat and went to sleep while I drove.
I thought about the letter and how we were supposed to push and pull, exercise, OT/PT, mental exercises, ....push push push.

What next?

Thursday, June 21, 2018

I am Nowhere.

So on the last check up with ENT a week ago there is still no re occurrence of cancer. Everything looks 'good'. 

We both sighed at that thinking soon the endless appointments and follow ups regarding the dreaded 'C' word would slow down to a six month break.

However Neuro-Surgery called and scheduled a CT scan to check out Rich's brain and to see if there were any changes to his brain aneurysm. After we got home a Neurosurgeon called to let us know that no significant changes had occurred but we were still scheduled to see them for his one year follow up.

The results from the tests with Neuro-psychology were in. Cognitive Disorder...Vascular Dementia. The full results will be mailed to us in two copies. One for Rich and one for me.

I think they will write up and include their recommendations. There was almost too much information given at our meeting of nearly 90 minutes.
My take away was the following.
Are POA's in order? Yes.
Driving? That will be addressed with OT/PT.
Could I now prepare his meds? Yes.
They are ready to invoke POA for Medical as they don't feel Rich can make decisions for himself.

I did explain that all of our decisions were made together and had been since he'd had cancer. 
The best thing I liked about these doctors is that they looked Rich right in the eye and explained things to him. They also confirmed that I understood what was going on.
I'd already had an inkling of the possibilities before the appointment.

The signs were all there. The confusion, the far away looks, the getting lost in 'No Where Land' as Rich had told me over and over again. The lack of ability to make an easy decision like to call to have his truck fixed, or to arrange to have some cattle shipped is now beyond his reach and thought process.

As I explained to our Farmer Friend, I wanted to let Rich feel like he was making the call, that he was still in charge. But I realize now that he may not be capable any longer. He has become mostly apathetic to what is going on around him.

It seems that decision making is too difficult for him. I've resisted that thought, I've resisted that conclusion and I had even decided that Rich was just too lazy or unconcerned to make these important decisions. I'd leave a phone number in front of him to call for his truck. He'd push it away and not look at it. I nagged, cajoled, and begged for him to call.
I got an irritated look in return and then nothing.

The shock for me is that it was there in front of me and I didn't want to believe it. 

Yesterday morning I felt lost. I felt panicked with the sudden realization that indeed my world had flipped again and so had Rich's. He was slowly drifting away into a place where I couldn't find him.
He can sit and have coffee with me in the morning. But I look at his face and find him not there.
His eyes are blank.

I ask him what is on his mind. And he blinks, then looks at me with a question on his lips and says, "I am nowhere."

My husband is leaving me. No dramas, no slammed doors - well, OK, a few slammed doors - and no suitcase in the hall, but there is another woman involved. Her name is Dementia. ~~ Laurie Graham.

Wednesday, April 25, 2018

Brain Drain

Dementia with Behavioral Disturbance, unspecified dementia type

This is the Primary Diagnosis for my Mother in Law.

What does this mean?
According to the some articles Dementia is now considered a fatal disease. That said, let's not freak out. Let's look at it logically.
Our brain is an organ that controls the rest of our body. It controls all of our organs. Think of it as our hard drive.
If a segment of the hard drive gets 'corrupted' certain functions of our computer won't work.

Rich is the Financial POA for his mom. It may be a job he is not capable of in the long run. His sister who is 'second' on the POA forms will be moving to Utah in about 8 weeks.
She spent the last two weeks with MIL, seeing how she'd fare in her apartment.

Well, MIL can do most things but her memory is a huge issue. MIL recalls that Mondays at the nursing home are days that they take baths. Her weeks are foggy to her. Certain things from the week before get lost in the memory fog.
So she may not realize that a Monday has arrived and needs that help.
Details regarding medications do stick with her, but if the pill manufacturer changes in any way, she gets rather upset and positive that her meds are incorrect.

Sometimes she has trouble telling day from night.

I signed up for an 8 hour course at, if nothing else, I can learn a bit of how to deal with some of the day to day issues that arise with dementia. Communication is one of the biggest challenges. I need to modify my way of thinking and communicating. The course is free.

We've contacted an attorney and are getting some social workers to her apartment to conduct a Home Evaluation. MIL is sure she will get her 'mind back' and be done with the family invading her spaces. I get that as she has been a strong willed woman who is fierce about her independence.

I've contacted Helping Hands to come out and meet with the both of use also. This way she can have another set of eyes checking on her as I cannot be in two places at once.

We will be investigating Guardianship for mom too. That would allow the family to be family and not be the 'controllers' of her everyday life. 

Chronic Kidney Disease is closely linked to issues of behavioral disturbances, dementia, depression, and sleep issues.

Chronic Kidney Disease was her primary diagnosis but she has declined to the level of having 'Dementia' along with it. 
One wouldn't think that Kidney issues would affect the brain, right?

The kidneys take out toxins in our blood and dispose of them. However, when the kidneys can't do their job, those toxins reach the brain.

No one likes to think of their parent as infirm. MIL's decline to this present state was very slow, so slow as to be imperceptible except for the past 6 months. Her lack of self care was evident, however we could not force her to seek medical care. It wasn't until she had a fall and was taken to the hospital that we were able to finally get her the medical attention she needed.

To that end, she has done very well. Five weeks of Physical Therapy and socialization, walking, and being on a schedule all improved her physical appearance and the edema in her legs while she was in Rehab.

Since she has returned to her apartment, she has closed her door to the outside world and retreated to her chair and bed. 

I do look at the bright spots though. Some days she is the 'angry' upset woman, and then there are those days were she is sunny and happy. 

I will have to lean on Social Workers for assistance as I am already the CareGiver to Rich. I'm not sure how to navigate this new issue on my own.

One step at a time, just like our journey through cancer and stroke.

Saturday, March 24, 2018

Elder Care

I thought I'd toss this in here as I really don't want it on my regular blog.

On the first weekend of March my mother in law who turned 87 on the 12th fell in her apartment and couldn't get up.
Rich's daughter and son in law found her on the floor.

She didn't want to go to the hospital but the EMT's did convince her to go.

She has severe edema in her legs and feet. Since Christmas, I've been trying to get her to go to her doctor and address those issues. MIL wasn't receptive to going to her physician or any doctor. She figured that she'd be just fine.

After nearly 20 days in rehab at the local nursing home, she is walking with a walker and moving about quite well. The edema has not gone away. In stage IV of chronic kidney disease, I don't think it will. PT and OT have improved her mobility and strength. We got her some special shoes/slippers for people with swollen feet. She hasn't been able to wear regular shoes since December.

We've discovered that MIL has some memory issues. The nursing staff is attributing that as to the reason she probably fell. MIL had a system for taking her meds but the general consensus is that her memory failed her and perhaps mixed up her medications.
She hadn't been eating regular meals, picking up after herself, or bathing either. I was desperate before the fall. She needed care and refused to get it. Or..simply forgot.

Here is the twist. There is no way of forcing someone to get medical care. However once she was admitted, two doctors invoked her POA of Healthcare. That meant she was not capable of making medical decisions on her own behalf.

It also threw in another terrible twist. She had never set up a POA for her financial matters.
If Rich had not been on her checking and savings account, her bills could have gone unpaid.
There are limitations.
Since MIL had not been taking care of her debts and some odd trends in spending for months...with no POA for Finances, we are helpless to take care of those things.
Once she returns home, if she is deemed no longer in need of a POA, she can do as she wishes.
She can not go to her appointments, she can choose not to pay her bills, and she can choose not to ask for assistance.

Legally? There is very little we can do to assist her without her approval.

The laws were set up to protect the elderly and I get that. I want to afford her all the dignity she needs. But.
I am at a huge loss as...a daughter in law as to how to assist her.

The nursing home is setting up an alarmed medication box for her to take her meds properly. MIL is resisting that saying she can take them just fine.

I hope that the med box works out and we can convince MIL to use it. I hope we can convince her to continue to exercise once she gets home too.

This is my first experience with caring for an elderly parent. What an incredible maze of paperwork, forms, and legal restrictions to jump through!

Tuesday, January 16, 2018

No Easy Answers

We've fought through throat cancer treatments and recovery. We seemed to do so well after that until the stroke came to strike out hard.

Well, the recovery physically from the stroke was amazing. Rich could walk, and move with no after effects. His speech had issues but most people can eventually get what he is trying to convey.

Then winter came on. Typically winter is his most difficult time anyway. Mentally it is draining because the weather is cold and the days are dreary. However COPD plays a huge factor in this too. 
Too cold? He can't breath outside. The cold air sends his bronchial tubes into spasms and it feels...well. No other word to describe it, like suffocation. Even with something over his mouth periodically to warm the air. Breathlessness or dyspnea is not a nice thing to feel. 

During the extreme cold days I have done the chores by myself. Even I have a bit of trouble while hauling a sled full of hay up the where the two of the bulls are kept. It is a steep walk in the summer and the winter. Extremely hot humid air and extremely dry cold air are enemies of getting your breath.

Depression has set in. It is like having a huge Black Cloak hanging over his head. Most mornings I pour his coffee when he gets up and give him a kiss. The he sits and stares out the window. The difference now compared to a year ago is the blank look of nobody there when I glance at him. I ask what he is thinking and he blinks as if the sound of my voice brought him back from....what he describes as 'No Where'.
He visits No Where quite often these days.

And when we do converse he talks about how he is no longer of any use, he has no purpose. If he weather is good enough for him to venture out and help with the morning chores, he gets dressed and goes about the morning routine.

When we come back in, he sits and stares off into No Where. Eventually he says that he *is not worth a damn* and gets up. He walks to the bedroom and goes to bed asking me to wake him up when it is time to water the stock.

Tremors. I'm not sure what to think of them. His father had what was called "Essential Tremors".  Rich has had them for a long time but they were a problem. Now they are in a very severe way. He can't carry a coffee cup across the room without spilling a trail of coffee. He feels terrible about it.

As his COPD meds are increased, I see a direct increase in the tremors. I looked up the causes of ET and found that COPD meds contribute to it. What a mean thing. COPD requires certain meds which in turn can contribute to worsening of the ET.
NIH had articles relating to the fact the ET are familial. In other words, it can run in the family. Rich's father had ET, Rich's mother has ET. It affected his fathers voice, it affects his mother's voice. At the young age of 68, it is affecting most actions that Rich takes along with his voice at times now also.

COPD unto itself is an insidious disease that is not curable. The doctors tell you to stay active. Simple to do if you can breath. 
Rich does stay as active as he can.

But the viscious downward spiral of COPD, the results of the stroke, the tremors, and feeling lost all add to a fairly significant winter depression. 
He feels somewhat hopeless and helpless. 

His only escape is to go sleep. And sleeping most of the day and the night do not help any of his health issues.

I find it interesting that the doctors say: You are doing so well! You made such a miraculous recovery from all the things that have been thrown your way!

To this man, each fight he's gone through has taken away a part of what he wanted to be and defined himself to be.
One counselor asked him to consider the fact that this would be his new normal.

I understood where she was going. Accept this and move forward.

I may be the type of person who can do that. But he can't.

He has always been a 'fixer'. If there was something that should be fixed, he'd fix it. Replace brakes? Muffler? Build a new and improved dog house? Insulate a water tank? All these projects are partially started and now sit gathering dust. 

He can't fix himself. He feels if he could understand exactly what went wrong, he could fix it.

In the past two weeks he has had other slight incidents that lead me to believe that he may be having a TIA. It happened quickly and was gone. Poof. 

Before I get told to rush him to the ER. I have. The results have not been exactly stellar. 
To be fair, the local hospital did do a good job in making sure that he was transported to the nearest trauma center. But only on orders from the VA.

Is there an easy answer to all of this? No.
Of course not. 

Saturday, January 6, 2018

Finding Resources

ADRC, we are pretty lucky to have ADRC in our state. I'm not sure this organization is in all 50 states or not. However there is a very simple and helpful site on the internet called Eldercare Locator. Simply type in your zip code and a list pops up on the next screen with what is available in your area.

I had a very good meeting with Tricia from ADRC. Finding help or a support group for caregiver is daunting. When Rich had cancer the Madison VA offered a support group.... the drive would have been two hours one way for a caregiver's meeting and 'workshop'. Um.
Nope, that doesn't work.
Gunderson Lutheran in LaCrosse offers a once a month meeting for Stroke CareGivers. One hour drive.
Nope, that doesn't work.
The Tomah VA offers a once a month meeting for CareGivers to Veterans. Hour and a half travel time one way.
Nope, that doesn't work.

Tricia commented that they have a support group for CareGivers for Dementia and Alzheimer's patients. This may be a good fit as Rich has trouble with communication and memory too. I said I'd go. After all, meeting with other people who are going through similar situations can only be a plus for me. Besides that, it is 20 minutes from home and I get to see other people.

I know, that sounds awful doesn't it?
I've convinced Rich that we'd even try the Memory Cafe in February.

We quickly moved into other areas of concern. Tricia made a phone call to the VSO [Veterans Service Officer] downstairs and she came up. We went over some of the things offered by the VA.

My other concern was trying to get some assistance or help for my reluctant Mother in Law. She has declined in health and in her ability to do things for herself.
I'm having a tough enough time getting everything taken care of in my own place, let alone trying to take care of her and her place too. She has a once a month housekeeper. That is just not cutting it at all. Her little apartment was filled with trash on Christmas Eve along with mounds of dirty dishes. She just said she couldn't take the trash out and just didn't feel like picking up.

Anyway, there is a stipend that we can get through the VA to assist us in helping Mom. Interesting.
She could get help from the state and county if her assets were two thousand or less.
However, we can get some assistance through the VA because we are assisting Mom. Okay, it sounds weird, but it would allow me to hire a certified Home and Personal Care Helper ... well something like a once a week in home helper that could do light housekeeping, assist with running errands, shopping, and at some point personal hygiene. The average price for hiring someone like this is about $19 to $25 per hour. I cannot afford that for her on my own so this is an alternate choice.

It is cheaper to help an elderly person stay in their home and help them, than it is to transfer them to a care facility.
I know we had approached Mom to get in touch with ADRC more than once and she said no.
Now we have to tell her that WE will get her the help. I hope she takes it.
Yesterday I got called out of the blue with an urgent..."I need my pain prescription!" I ran to town and picked up the script and delivered it. I couldn't stay as I had to get back for evening chores and for Rich.

A quick glance around the apartment told me that she hadn't changed or made her bed in a long time. Her hair was matted and she basically looked pretty gnarly. She told me that her legs had swelled again so tight that she couldn't hardly get out of her chair.

We will be going to her apartment today or tomorrow and presenting her with the option of some help.
I can't knowingly let her live like this. Yet I can't watch over Rich and take care of her also...

I spent the next 2 hours with Cyrstal from the VSO office. We put some paperwork together for Rich filing also for Agent Orange. There will be no money for that, just getting his record updated to include his AO contamination.
Apparently the VA is accrediting COPD and lung issues along with a huge variety of cancers to AO. Good to have those on record now and not later.

The last bit of work I have to do is file to be Rich's official CareGiver. I will be taking a class through the VA but provided through the county office. This last filing if approved [lots of paperwork and a doctor visit] would assist us and 'pay' me to take care of Rich.
Are you ready for the huge amount?
Nearly $30 per week!

I will not complain. It may help out with groceries right? However the bigger bonus will be that I will qualify for respite care which I anticipate needing in the future. IF I don't take care of me, no one will take care of him.

So I am leaving anyone who reads this with a few thoughts.

Don't wait until it is too late if you have an elderly person in your life. See if you can sit them down and talk to them.
Do your research now.
Because ... tomorrow ... or in a few years, we will be that elderly person who will need these resources.